Empowering Patients with Visual Illustrated Contracts
Legal contracts use complex wording and jargon making them difficult to understand. When the document is in a language other than the native language of one of the parties, or when one of the parties has lower literacy levels, this gap in understanding can create a power imbalance between them.
Seeking a solution to this universal problem, lawyer Robert de Rooy developed the Comic Contract, the world’s first fully illustrated contract, where the terms of the contract are illustrated in pictures and that illiterate people can understand and sign.
Robert set up Creative Contracts, a team of lawyers, designers and copywriters that works with Jincom, specialists in visual health and safety tools for industry, to simplify and visualise complex technical text-heavy documents into visually engaging, accurate and legal binding contracts.
The goal of an illustrated contract is that both parties, regardless of their literacy level or proficiency in a language, can fully understand the terms of the contract.
The simplified contracts are visually engaging, accurate and legally binding with the parties to the contract represented by characters and the terms of the agreement captured in pictures. The parties sign the comic as their contract. In other words, the comic is the contract.
For the employer, it can reduce the amount of time spent on contracting, with the signed contracts stored online and available to both parties.
For workers, their rights and obligations, pay and conditions and role and responsibilities are quickly understood, improving the induction process.
While a comic contract makes an employment agreement more transparent and strengthens the relationship between employee and employer, similarly, in healthcare and research visual contracts help to build trust between patient and researcher.
Medical researchers face additional challenges when enrolling participants in studies. Does the participant fully understand what the study entails? Do they know what the researcher’s expectations are? Do they agree to participate with fully understanding and acceptance of the risks involved – however minor?
Creative Contracts Project Director Claire Harcourt-Cooke explained to Jincom how comic contracts facilitate better understanding and communication in healthcare settings.
Creative Contracts is currently working with four healthcare related projects: THINK-TB, a NGO helping TB patients access the healthcare they need, and three research projects at Stellenbosch University: CHERISH, MIGH-T MO and ESSENCE-Q to overcome barriers to understanding and bridge gaps in communication.
They produce visually engaging explanatory booklets and consent forms which fully illustrate and explain the study and the contribution expected from participants including blood tests, screening, medical examinations and recording of medication regimen.
CHERISH is a study involving the babies of women with HIV up to three years of age. The research is led by paediatrician, Dr. Amy Slogrove, at Stellenbosch University, and has two groups: babies of women with HIV to see if there is an effect on the baby from the virus or from antiretroviral drugs and the second group is babies of women without HIV to compare the results.
Creative Contracts produced a booklet for CHERISH in English, Afrikaans and Xhosa explaining the research, patient consent forms (consisting of a declaration to consent to participating and a redeclaration after the birth) and a consent form for the researcher or interpreter.
Dr. Slogrove requested that the consent form has space for the use of the interpreter as she is familiar with the region and recognises that some participants might be illiterate or speak another language.
Visual illustrated booklets also empower patients undergoing treatment for drug-resistant tuberculosis (TB). Researchers from the TB and HIV Investigative Network (THINK) and funded by the United States Agency for International Development (USAID), work with rural communities in the KwaZulu-Natal province of South Africa and commissioned Creative Contracts to produce a booklet in English and isiZulu, for patients.
Treatment of drug-resistant TB involves a complex regimen requiring up to seven different drugs and a detailed dosing schedule. The booklet uses illustrations to explain the treatment regimen. It also has a progress chart and includes other information on potential medication side effects and correct storage of medication. The booklet is used with pillboxes to enable participants to understand and adhere to the treatment plan.
Claire shared how contract workers have said that the representation in the comics makes them feel valued and empowered. She believes that a party to a contract, whether it be an employee or a patient, if they have lower levels of literacy but see something “that’s been designed with them in mind and they can understand it, it puts the relationship on a more solid footing.”
Feedback from the THINK study has been very positive with THINK researchers sharing that the success of the treatment adherence programme can be “attributed to the development of the Adherence Information Booklet and pillboxes. These tools simplify dosing schedules and guide the patients on their road to recovery.”
A counsellor who works on the THINK adherence programme explained how the booklets benefit the patients:
“The pictures tell a story that most of our patients understand. It starts with their first hospital visit and follows the journey until they are discharged. It also explains things that they need to practice at home.”
Creative Contracts is working with MIGH-T Mo, a research study to test a new drug for children born to HIV positive mothers. The study at Stellenbosch University and supported by the University of Stanford and Columbia University, University of California, San Diego and Los Angeles, has two groups: one group is given the drug and the other a placebo.
Booklets explaining the research and the participants' rights were produced in English, Afrikaans and Xhosa. Claire explained the challenges of illustrating that even the researchers don't know which child is getting either the drug or the placebo and that information is completely confidential until the end of the trial when data analysis begins.
The fourth healthcare project – ESSENCE-Q - also presented unique challenges when it came to representation of the contractual parties.
Creative Contracts produced an informed consent booklet in English, Afrikaans and Xhosa, for ESSENCE-Q, a neurodevelopment study examining the effectiveness of using the ESSENCE questionnaire in screening for autism and other neurodiverse conditions. The study is the PhD research for Dr. Ben Truter and supervised by Dr. Amy Slogrove.
Claire said this project presents a different challenge where the booklet had to “illustrate symptoms of autistic children and the complex situations they might be in.”
She explained that some people will be reluctant to seek a diagnosis for their child and illustrators and designers must be sensitive about how the children are represented and show the symptoms clearly at the same time.
“Mothers might not want to know that their child is autistic or that they have any other conditions like ADHD or dyslexia.”
Improving commitment to long-term studies
One key benefit of using visuals in healthcare is in improving commitment to long-term studies.
While Claire explained that each research study has a different approach, the ultimate goal is the same: helping researchers with treatments. “Something that's visual and explained, makes a big difference” when it comes to recruiting and retaining participants for studies.
For example, the booklet for the CHERISH research study has a section explaining what the participant will get from taking part in the research. Participants sign up when they're pregnant and receive pregnancy scans and antenatal care. So although they don’t receive payment, Claire explains, “It's optimised healthcare in a sense and free that they might not have access to otherwise.”
“I think one of the reasons they wanted this informed consent illustrated is to make sure people come back.
“That's the big thing: being able to explain to participants that they do need to come back. They should understand that they are contributing to important research and the benefits they get as well.”
Meeting the needs of the parties
Creative Contracts manages the various needs of the parties to the contract and ensures the needs of all the stakeholders are met including the participants, researchers and funding bodies including universities and ethics committees.
The contracts can be easily adapted for different needs and parties to the contract. For example, with CHERISH, the researchers are trying to recruit as many mothers as possible, and that includes underage mothers. And so, for these young mothers the consent forms were changed slightly to include the space for a parent or guardian to sign.
Overall, creating contracts that are visual and easily understood benefit everyone and help to ensure the relationship between medical researchers and patients is transparent and satisfying to both parties.
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